Fighting the Odds

I walk into your room in the pediatric intensive-care unit as two nurses are repositioning you. Your parents stand nearby--your dad in his frayed baseball cap and khaki cargo shorts; your mom, her baggy jeans wrinkled with the same worry as the lines near her eyes. Your little sister sits near the window with a blue hospital mask over her mouth, hugging her knees; Grandma sits snug beside her, back straight and hair done, expression cordial.

You are a fifteen-year-old boy with leukemia who came into our emergency department last week with fevers, but spiraled quickly into septic shock with multiorgan failure.

I am the nurse practitioner on the inpatient infectious diseases service at a children's hospital in Southern California. It's my first year here, and, having worked for years in rural areas, I'm only newly adjusted to being in a large urban teaching hospital.

I look at all six-foot-plus of you lying in the bed and automatically start counting the tubes and drains coming out of you--two chest tubes on the right, two on the left. One drain from your right abdomen, one from your left. Six pieces of plastic draining fluids of different colors and consistencies into various containers: murky green, transparent orange-yellow, thick red blood, mixed orange with red speckles and streaks.

Tuesday

Your parents nod understandingly as we talk, once again, about your fungal infection. Our team has been treating it for the past week, but you're not quite getting better.

Your dad has been talking online with other families whose children with leukemia have gone through similar infections.

"I know I'm not supposed to do that," he apologizes, then asks, "Is it reasonable to say that our son has a sixty percent chance of coming out of this?"

The resounding silence reminds me of that moment right after a pianist plays the final chords of a concerto, then waits to receive either thunderous applause or a few forced, compulsory claps.

Mentally, I continue the attending's sentence: "...because, if we could put a number to it, your son's chance of making it would be more like ten percent."

Ten percent.

Wednesday

Your nurse tells our team that she's noticed a new rash near your bottom.

"Can we see it?" I ask.

Your monitor starts beeping: Your heart rate is going up. Your eyes open half a centimeter, your body starts to shake, and for a few minutes, before you disappear into sedation, I see panic and fear, but most of all, teenage self-consciousness.

Before we leave, your parents thank us for coming by, for answering their questions, for trying so hard to get you through this infection. It's astounding to me that they can express gratitude and kindness towards us when it's their baby who's sick. In some strange way, I want them just to yell at us for not saving you. When I walk into your room, a part of me wishes that they'd stare coldly, instead of gathering themselves up, offering smiles and asking me how I am.

Thursday

Your mother's eyes are rubbed raw and cried crimson. Her shoulders, perky last week, now sag downwards, and her hair is pulled into a listless ponytail. Her hands, though, remain strong: As we talk, they massage everything that love is made of into your legs.

As I listen to your heart, press on your tummy, examine your skin, I see your mother, from the corner of my eye, standing near the bathroom door and repeatedly flapping her hands in the air in absolute despair. She's biting down on her lower lip. Hard.

In the PICU, no news is often good news, but this is not so for you. It means that there's nothing more we can add or switch to help you get better. Your mother knows this, too, for when I softly put my hand on her shoulder to express all the words I cannot say, she instantly crumbles and starts crying.

At the end of the day, the fellow and I circle back to the PICU to check on you. That's when we find out that your family is saying their goodbyes. You'll be extubated later in the evening.

A miserable silence trails us as we leave and walk down the hall that somehow seems longer and darker today.

Eventually the fellow mumbles, "And I became a doctor because I wanted to make kids better."

Saturday

Waking at 5:30 am, I immediately think of your PICU room. It's probably empty now, smelling of bleach and alcohol. Its doors are likely closed and taped shut, the darkness within lit only by the occasional pulse of bright purple light from the UV scanner that zaps and destroys any remaining germs in the room.

Your ten percent has been gnawing at me all week--but today it becomes a perverted symphony of ten thousand accusations, breeding guilt and doubt. I obsessively replay every visit I had with you, rethink every look your parents gave me, reevaluate every sentence we spoke. I find myself hiding in my room all day, curtains drawn, phone turned off to avoid having to respond to happy text messages, and laptop shut down because seeing social-media selfies makes me irrationally irritated.

Sunday

In the evening, I take a walk around my colorful, tree-lined neighborhood while listening to a song called Oceans. It's about stepping into the waters despite their terrifying depths and crashing waves. About venturing into unknown lands despite fear and exhaustion. About standing in the chaos of uncertainty while darkness swirls around your feet. About doing all this despite not understanding the mystery of it all.

For it really is such a mystery--one that I will never figure out. In the end, despite having all of science on my side, I will never understand why some patients end up as percentages. I will never understand why, despite all of our fancy tests, antimicrobials and medical advances telling us that you should get better, you just got sicker.

Reflecting upon these last seven days of not knowing, I see that the one certainty was your family's absolute love for you.

Remembering the incredible privilege of being invited into that intimate space fills me with gratitude. It reminds me of all that I'm blessed with: my textured, experiential, three-dimensional life that's not confined to a hospital room.

It gives me a renewed determination to press on, to honor and respect your ten percent and to live changed by you and your family.

Most of all, it provides me with just enough hope to walk through the hospital doors tomorrow morning, a genuine smile on my face, trying my best to improve the percentages for the ones who will next occupy your room.

About the author:

Evelyn Lai is a pediatric nurse practitioner practicing in Brooklyn, NY, and pursuing her master's degree in narrative medicine at Columbia University. "I've always loved stories. It's why I ended up as an English major in college. It's also why I'm now a nurse practitioner. There are so many stories in health care, and sometimes they're just heartbreaking. But that's why I write."

Evelyn, I am deeply grateful for your work, both on and off the page. My son died in February. He was hospitalized for six months prior, refractory leukemia. His nurses became our family. I love them in a place in my heart that is all their own. When I asked how they were doing, I truly wanted to know. I needed to know. I cared about them all like sisters. They loved my son. LOVED him. I could see it in their faces, every day. It is so powerful to read your experience and consider the echo these children leave in your hearts as well. THANK YOU.

Evelyn! Thank you for sharing. For so many of us, who do not live lives near these experiences, we are rarely invited into the pains and the laments, and writing certainly is a bridge to allow others to relate and understand to people like yourself, those in medicine, called to work with the wounded, the dying, and the broken. Like you, this mystery leaves me baffled. I am grateful to have shared this story with you and join in the song of lament, for the family in this story, the thousands like them, and the practitioners who have, are, and will continue to care for them. Thank you for inviting me into the mystery.

Thank you, Evelyn, for this elegantly and eloquently expressed tribute to this young man and his family. I am a hospice social worker (in Austin,Tx) for the same reason. The stories. The stories are such amazing teachers. Thank you for sharing yours, and for all the great works you do. I like how you show up in the world.

Thought provoking. I pray our family is never in need of your compassionate care and wisdom, but thankful those of you who sacrifice and work so hard to give compassionate care to children in our communities. Thank you, Evelyn. You and your team are prayed for.

Rarely have I ever read something where I felt like I was walking alongside someone and feeling each moment, each precious heartbeat. Thank you. Beautiful and heartbreaking...but you left me with hope and gratitude.

Evelyn, you have the intellect and skills of a pediatric nurse, but the soul of a poet. What a beautiful essay--a tribute to one family and to love. I am sorry that the story did not end "happily ever after"--I have learned that not all stories do-- but I am grateful you were there for that family, and that you will be there for many, many more families. You are a blessing to the world of medicine.

Thank you. Our son Evan passed at PICU last March at CHLA after 18 month battle with sarcoma. The care at his home hospital All Children’s and this one (we were on his make a wish trip when he got too sick and we ended up there) was so extraordinary all caregivers are earth angels but those who care for our sick and dying children have a special place in heaven. Please focus on the good you do. We all die some sooner than others but people like you make the tragic just a bit more bearable. ❤️